Diana C Garofalo1, Shawn T Sorge2,3, Dale C Hesdorffer1,2, Melodie R Winawer2,4, Jo C Phelan5, Wendy K Chung6,7, Ruth Ottman1,2,4,8. 1. Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, New York. 2. G. H. Sergievsky Center, College of Physicians and Surgeons, Columbia University, New York, New York. 3. Department of Clinical Psychology, Long Island University, Brooklyn, New York. 4. Department of Neurology, College of Physicians and Surgeons, Columbia University, New York, New York. 5. Department of Sociomedical Sciences, Mailman School of Public Health, Columbia University, New York, New York. 6. Department of Pediatrics, College of Physicians and Surgeons, Columbia University, New York, New York. 7. Department of Medicine, College of Physicians and Surgeons, Columbia University, New York, New York. 8. Division of Translational Epidemiology, New York State Psychiatric Institute, New York, New York.
Abstract
OBJECTIVE: Studies have found that affected individuals who believe the cause of their disorder is genetic may react in various ways, including optimism for improved treatments and pessimism due to perceived permanence of the condition. This study assessed the psychosocial impact of genetic attribution among people with epilepsy. METHODS: Study participants were 165 persons with epilepsy from multiplex epilepsy families who completed a self-administered survey. Psychosocial impact of epilepsy was assessed with the Impact of Epilepsy Scale, containing items about relationships, employment, overall health, self-esteem, and standard of living. Genetic attribution was assessed using a scale derived from three items asking about the role of genetics in causing epilepsy in the family, the chance of having an epilepsy-related mutation, and the influence of genetics in causing the participant's epilepsy. We estimated prevalence ratios (PRs) for impact of epilepsy above the median using Poisson regression with robust standard errors, adjusting for number of lifetime seizures and time since last seizure. RESULTS: Participants' age averaged 51 years; 87% were non-Hispanic white, 63% were women, and 54% were college graduates. The genetic attribution scale was significantly associated with having a high impact of epilepsy (adjusted PR = 1.4, 95% confidence interval = 1.07-1.91, P = .02). One of the three genetic attribution questions was also significantly associated with a high impact of epilepsy (belief that genetics had a big role in causing epilepsy in the family, adjusted PR = 1.8). SIGNIFICANCE: These findings reflect an association between the psychosocial impact of epilepsy and the belief that epilepsy has a genetic cause, among people with epilepsy in families containing multiple affected individuals. This association could arise either because belief in a genetic cause leads to increased psychosocial impacts, or because a greater psychosocial impact of epilepsy leads some to believe their epilepsy is genetic. Wiley Periodicals, Inc.
OBJECTIVE: Studies have found that affected individuals who believe the cause of their disorder is genetic may react in various ways, including optimism for improved treatments and pessimism due to perceived permanence of the condition. This study assessed the psychosocial impact of genetic attribution among people with epilepsy. METHODS: Study participants were 165 persons with epilepsy from multiplex epilepsy families who completed a self-administered survey. Psychosocial impact of epilepsy was assessed with the Impact of Epilepsy Scale, containing items about relationships, employment, overall health, self-esteem, and standard of living. Genetic attribution was assessed using a scale derived from three items asking about the role of genetics in causing epilepsy in the family, the chance of having an epilepsy-related mutation, and the influence of genetics in causing the participant's epilepsy. We estimated prevalence ratios (PRs) for impact of epilepsy above the median using Poisson regression with robust standard errors, adjusting for number of lifetime seizures and time since last seizure. RESULTS:Participants' age averaged 51 years; 87% were non-Hispanic white, 63% were women, and 54% were college graduates. The genetic attribution scale was significantly associated with having a high impact of epilepsy (adjusted PR = 1.4, 95% confidence interval = 1.07-1.91, P = .02). One of the three genetic attribution questions was also significantly associated with a high impact of epilepsy (belief that genetics had a big role in causing epilepsy in the family, adjusted PR = 1.8). SIGNIFICANCE: These findings reflect an association between the psychosocial impact of epilepsy and the belief that epilepsy has a genetic cause, among people with epilepsy in families containing multiple affected individuals. This association could arise either because belief in a genetic cause leads to increased psychosocial impacts, or because a greater psychosocial impact of epilepsy leads some to believe their epilepsy is genetic. Wiley Periodicals, Inc.
Authors: Maya Sabatello; Jo C Phelan; Dale C Hesdorffer; Sara Shostak; Jeff Goldsmith; Shawn T Sorge; Melodie R Winawer; Wendy K Chung; Ruth Ottman Journal: Epilepsia Date: 2015-08-20 Impact factor: 5.864
Authors: Shawn T Sorge; Dale C Hesdorffer; Jo C Phelan; Melodie R Winawer; Sara Shostak; Jeff Goldsmith; Wendy K Chung; Ruth Ottman Journal: Epilepsia Date: 2016-08-25 Impact factor: 5.864
Authors: Anette Fischer Pedersen; Philip Rossen; Frede Olesen; Hans von der Maase; Peter Vedsted Journal: Psychooncology Date: 2011-08-25 Impact factor: 3.894
Authors: Jacquelyn Nakamura; Shawn T Sorge; Melodie R Winawer; Jo C Phelan; Wendy K Chung; Ruth Ottman Journal: Epilepsia Date: 2021-04-04 Impact factor: 5.864